CHEYENNE – Tents lined a dusty trail dotted with dry scrub, amid an otherwise green backdrop of the Rocky Mountains. Music, cowbells and cheering could be heard periodically during the late summer morning last month near Leadville, Colorado.
Under one of the tents were three children, either sitting in folding chairs or walking around, anxious to see their mother, Mickey Sanderson, ride past them on a mountain bike. Another child was slung over the back of Mickey’s husband, Mitchell Sanderson, who carried the 7-year-old boy, Raylan, in a backpack carrier.
The three other children – 15-year-old Jaydon, 12-year-old Krystina and 5-year-old Wyatt – held signs the family made, featuring phrases like “100% No Less” and “MTB Queen is Mommy.”
When Mickey Sanderson eventually arrived at the tent, positioned near the 40-mile cutoff of the Leadville Trail 100 MTB mountain bike race, it was on foot. She burst into tears when she saw her children, who quickly surrounded her. She melted into their embraces and cried.
It wasn’t quite the ending she’d hoped for: Sanderson’s goal was to finish the race, which would have meant completing just over 100 miles in central Colorado’s mountainous terrain.
Instead, she missed the race’s cutoff time, measured at the 40-mile mark.
But Sanderson’s tears, she would later tell her family, had as much to do with the relief of seeing their faces.
“I was sad that I didn’t make it, but I really just wanted to hug my kids. That’s pretty much all I thought about for the last probably 10 miles. I just … I wanted to see my kids,” she said on race day, which was Aug. 13.
Her thoughts even drifted to Raylan. He was probably hot, she said, and if she didn’t make the cutoff time to continue the race, they could get him out of the sun.
Her children were quick to try and comfort her, and to offer their encouragement.
“There’s always next year,” said Jaydon, then 14. “And the year after that.”
Even through disappointment, Mickey Sanderson was pragmatic about the race. She opened what she joked was a “celebratory” can of Cherry Pepsi.
“What happened was I wasn’t fast enough,” she told her family. “40 miles is still 40 miles, right?”
“You didn’t die,” Jaydon said.
“I did not die,” Mickey echoed.
Mickey’s four children, whom she shares with Mitchell, seem to be at the heart of everything the 33-year-old does. If not for Raylan, Mickey likely would not have been in Leadville at all.
Raylan was diagnosed in 2017 with SYNGAP1-related neurodevelopmental disorder, which is often shortened colloquially to SYNGAP1.
However, “SYNGAP1 is not the name of a medical condition, but rather is the name of the gene that is affected,” according to Children’s Hospital of Philadelphia, which conducts research and offers treatments for the genetic disorder. “When a disorder is traced back to a pathogenic variant in the SYNGAP1 gene, it is called a SYNGAP1-related disorder.”
A “mutation” in the SYNGAP1 gene can “cause a spectrum of neurodevelopmental disorders that can include childhood-onset epilepsy, developmental delays, movement disorders and features of autism spectrum disorder. The symptoms a child experiences and the severity of the disorder can vary widely,” the CHOP website continues.
Just over 1,000 people have been diagnosed with a SYNGAP1-related disorder. Experts say this is a significant undercount, because so much is still being learned about SYNGAP1-related disorders, and individuals must undergo genetic testing to be diagnosed.
Because of the complications caused by this genetic mutation, Raylan is nonverbal and has developmental delays, decreased muscle tone and mobility issues, and intractable epilepsy, meaning his seizures can’t be completely controlled by medication.
Mickey Sanderson began competing in mountain bike races to raise awareness of her son’s condition, and to raise money for an international nonprofit dedicated to SYNGAP1 research.
Leadville, called the “race across the sky,” is considered by many to be one of the most difficult mountain bike races in the country, if not the world. Its elevation begins at 10,152 feet and reaches 12,424 feet at its highest, according to cyclingnews.com.
Sanderson has only been racing on a mountain bike since July 2021. Since then, she’s competed in numerous races. It’s a key way for her to not only cope with the stress of parenting – and parenting a special-needs child – but also to spread awareness about the disorder and help raise money for research.
“I’m not a doctor, I’m not a physical therapist. But I know how to ride a bike,” Sanderson said. “So, whatever your talents are, whatever God’s given you to use, that’s what you use. … It was an opportunity to teach my kids that there’s always something worth fighting for, no matter how big or how small.”
This year, having not had a qualifying time at a previous race, Sanderson was chosen to participate in Leadville through its lottery.
It was the first race her husband and children had been able to attend. Sanderson made T-shirts for her family to wear at the race that said “Ride for Raylan” on the front, and “Support Crew” on the back. The family then tie-dyed the shirts in blue, green and purple, the colors that represent SYNGAP1.
Her next race will be the Austin Rattler on Nov. 5 in Texas. Depending on her time, she could qualify at that race for Leadville 2023.
Getting to the point of diagnosis for Raylan was a difficult process in itself.
Raylan was about 9 months old when Sanderson began realizing her son wasn’t hitting milestones: not sitting up, not rolling over. He began attending occupational therapy soon after.
The next thing she noticed was his mobility – that he seemed to have very low muscle tone, making him “floppy.”
After Raylan learned to walk, Sanderson began noticing that he was having seizures. She estimates he was having around 100 seizures each day at 2 years old. At about 2-1/2, he was also diagnosed with developmental delay with autism. But Sanderson “wasn’t getting the answers” about his seizures, and doctors continued to change Raylan’s medicine.
Then, after seeking a second opinion at Children’s Hospital Colorado, Raylan had an extended EEG, which found he was having “constant” seizure activity, Sanderson said.
This experience came after a long period of being told by doctors and loved ones alike that her son wasn’t having seizures at all, or that Sanderson wasn’t seeing what she thought she was seeing.
“For, like, three years, everyone thought Mom was crazy,” Sanderson said. “I kept telling everyone, ‘He’s having seizures, he’s having seizures. I know he’s having seizures.’”
Following the EEG, Raylan was diagnosed with intractable epilepsy, and the family was encouraged to have a genetic testing panel done.
“I realized at that moment that, no matter how many people made me feel like I was crazy, that I would never stop advocating for him, because he does not have a voice,” Sanderson said. “And if I don’t give him one, and I let other people take it away from him, that’s not a quality of life for anybody.”
Through that panel, Raylan was diagnosed with SYNGAP1-related disorder at about 3 years old.
Dr. Jillian McKee is an epilepsy neurogenetics fellow at Children’s Hospital of Philadelphia. In an interview with the Wyoming Tribune Eagle, she explained that before children with SYNGAP1-related disorders begin have seizures, their families often notice developmental delays and autism spectrum disorder-like symptoms, along with that “floppiness” when a child is a baby, like Sanderson noticed early on in Raylan’s life.
In September 2020, the boy underwent a corpus callosotomy, which is a surgery that separates the two hemispheres of the brain and can help reduce the severity of seizures. Since the procedure, Sanderson said Raylan’s atonic, or drop, seizures have been rare.
Before his diagnosis, being the only person who seemed to see Raylan’s medical struggles was “super isolating,” she said.
With a diagnosis came some answers, a potential way forward, and eventually a community of parents whose children also had been diagnosed with this genetic disorder.
In many ways, though, finally putting a name to Raylan’s challenges was just the beginning of what would be a long road.
“When I got that diagnosis for him, I feel like I broke all over again,” Sanderson said, becoming emotional. “Like, I didn’t know what I was supposed to do next.”
What she did next was try to find a community, connecting with other families who’d received the same diagnosis.
She also made it part of her mission to spread the word about SYNGAP1-related disorders, so that if other families noticed signs and symptoms in their children, they might seek out the genetic testing necessary to detect the disorder.
Mountain biking has become a big piece of this awareness building for Sanderson.
“It is such a loving community – it is a community that’s, like, everybody has a life story, and they want to listen to it,” she said. “So I started to ride, and I just kind of talk about my son.”
This has helped her connect with others out on the trail, including those who also have loved ones with genetic disorders.
Researchers say people with SYNGAP1-related disorders make up about 1-2% of those with intellectual disabilities, making this type of mutation a relatively common genetic cause of intellectual disability.
Sanderson isn’t aware of another person in Wyoming that’s been diagnosed with a SYNGAP1-related disorder, although, statistically, there could be anywhere from 20 to 50 people in the state who have it and may not know it, said Dr. Ingo Helbig, a pediatric neurologist at Children’s Hospital of Philadelphia.
At the time of his diagnosis in October 2017, Sanderson said Raylan was around number 500 of those diagnosed internationally. That number is now close to 1,100.
The Sanderson family has been stationed at F.E. Warren Air Force Base for 10 of the 13 years Mitchell Sanderson has been in the military: from 2009 to 2012, and again from 2015 to the present.
Because of Mitchell’s job, he’s away from the house about half of the month. During these times, it’s even more essential that Mickey and the kids are “a team,” as she calls them.
As a largely stay-at-home mom, riding a bike and training for races are the main way Sanderson said she takes mental health breaks and is able to take time for herself, whether that’s at the base gym or out on a trail.
She said she’s always been into biking, even racing BMX as a kid, but she couldn’t get her family into it. Then, in 2020, the COVID-19 pandemic began affecting Wyoming.
“I was like, ‘I am sick of these kids being in the house,’” she said.
Sanderson’s two older children had bikes, but Sanderson said she couldn’t figure out how to bike with Raylan, who, because of his condition, doesn’t have the muscle tone to hold himself up on a bike. She put him in a sling on her back until she found a bike trailer, which she said will hold the boy until he’s 100 pounds.
Then, earlier this summer, Raylan received an adaptive bike from Make-A-Wish Wyoming. Sanderson, who has worked as a bike mechanic at Rock On Wheels, requested that she be able to build the bike.
It was after the family began biking together in 2020 – first on the greenway, and then on trails at Curt Gowdy State Park – that Sanderson had an epiphany: she absolutely loved biking.
She began signing up for races in early 2021, starting with the fat bike Chubby Chaser race near Laramie that March. When she arrived home from that race, she signed up for Sunrise to Sunset, a bike race in Winter Park, Colorado, where competitors ride as many miles as they can in 12 hours.
She then participated in a slew of bike rides, all leading up to her first mountain bike race in July 2021.
She eventually began using the phrase “Ride for Raylan” and #RideforRaylan on social media.
“I didn’t really have a way to raise funds with it yet, because I just wanted to use it to bring awareness, and then I reached out to” the SynGAP Research Fund, she said. She currently uses the website syngap.fund/Raylan to raise money.
Mike Graglia is the managing director of the organization, which he founded with his wife, Ashley Evans. Like Raylan, their son, Tony, has a SYNGAP1-related disorder.
Tony, now 8, was 4 years old when he was diagnosed. After discovering “no one was really investing in science specifically” for SYNGAP1, the couple created the research fund with the goal of developing drugs and genetic therapies “that can improve our kids’ function so that the rest of their lives is less traumatic.”
“The current future for these kids is they get harder and harder, and they get on more and more meds, they end up in institutions, families get exhausted – I mean, these kids are a ton of work,” Graglia said. “We love our son, we all love our kids, so we created the fund as a way for Mickey and ourselves and other parents to do whatever they could to improve the future for our kids.”
Graglia said there are a number of parents of children with SYNGAP1-related disorders who run or cycle or mountain bike and encourage others to donate to the research fund as they train.
Having a child receive such a life-altering diagnosis can be extremely difficult for parents, Graglia said. They may initially feel very sad, or feel as though there’s no hope.
“By giving them something to do, by encouraging them to raise funds, you can channel that energy,” he said. “You can point people toward the better future.”
Sanderson uses the Facebook page Ride for Raylan to keep friends, family and supporters updated on her mountain bike training and races, as well as how Raylan is doing.
In the run-up to Leadville, she raised $2,064.
Raylan currently takes three different medications for epilepsy, one for low motility in his bowels, and one for dysautonomia, or dysfunction of the autonomic nervous system, which controls involuntary body functions like heart rate, breathing and digestion. He takes each of these twice a day.
Outside of medication, Raylan gets physical therapy, occupational therapy, speech therapy and vision therapy, which helps with damage to his brain-eye communication caused by his large number of seizures. He also sees a neurologist regularly. With so many individuals on his care team, he sees someone at Children’s Hospital Colorado at least once each month, Sanderson said.
“Right now, there is no targeted therapy for (SYNGAP1-related disorders) specifically that’s currently available,” said McKee. “Our strategy for helping these patients is mainly to target what symptoms they present with. … We do know some medications tend to be more effective, so we can target our therapies that way, but it’s somewhat nonspecific at this point, with no targeted treatment that specifically affects the SynGAP protein. Hopefully, in the future, that is coming, but not available currently.”
Helbig added that there is still a lot to understand about SYNGAP1-related disorders and how they affect the people who have them.
Still, Raylan is a happy, relatively social kid. He’s observant – he noticed his shadow at an earlier age than Sanderson’s other children, she said, laughing when he saw it move where he moved.
He loves being outside in nature, is mesmerized by water, and, of course, loves to ride his bike.
Shortly after finishing her 40-mile ride in the Rockies last month, Sanderson asked her husband to put Raylan’s carrier onto her back.
At one point, she walked over to stand alongside the trail, pointing out to her son the riders who quickly blew past the tents.
“Look, Ray Ray,” she said excitedly, gesturing at the people who excitedly rode their bikes – just like her, and just like Raylan.
Hannah Black is the Wyoming Tribune Eagle’s criminal justice reporter. She can be reached at email@example.com or 307-633-3128. Follow her on Twitter at @hannahcblack.